International Arnold-Chiari Syndrome Day: September 28th.

 

Like every year, we join the global recognition of Arnold-Chiari Syndrome, marking this occasion with the hope of a better understanding by the medical community of this condition, and consequently, a better quality of life for patients.

Nearly 50 years ago, Dr. M. B. Royo-Salvador identified the cause behind the descent of the cerebellar tonsils in Arnold-Chiari I: the Filum Disease. From that discovery, he devoted his work to refining an effective surgical solution that targets the condition’s cause and halts progression. This led him to develop a unique, minimally invasive technique: the Sectioning of the Filum Terminale, which is exclusive to the Filum System^® method. This technique was published in 1997, with its results presented in 2005. (https://institutchiaribcn.com/en/dr-royo-publications/).

So far, our Institute has treated over 1,500 cases with descent of the cerebellar tonsils and has achieved outstanding results. We have not only met our goal of halting the disease’s progression but in several instances, we have seen the tonsils rise back to their normal position. We have encountered no major complications in any of the cases. Moreover, 94.6% of patients report a better quality of life in the long run, based on follow-ups conducted 15-20 years post-surgery. This success brings deep satisfaction to our patients, their families, and our dedicated team.

Since starting out, Dr. Royo’s team has diagnosed and confirmed over 2,600 cases of Filum Disease with descent of the cerebellar tonsils. These diagnoses have been made both in-person and remotely, with the team also examining many patients’ family members through relevant tests. Given that the Chiari malformation likely has a genetic origin, we have uncovered more related conditions within families, which might otherwise go unnoticed. We address these findings using a safe and efficient approach.

In conclusion, we are hopeful that our team’s successes, combined with the positive outcomes for our patients and the spread of our method, will empower more specialists to better understand this condition. This, in turn, should guide them in selecting the most suitable treatment for those diagnosed with Arnold-Chiari I.

15th anniversary of the Institut Chiari & Siringomielia & Escoliosis de Barcelona

We are excited to celebrate the 15th anniversary of the Institut Chiari & Syringomyelia & Scoliosis de Barcelona (ICSEB). During these 15 years, we have dedicated our efforts to improve the health of individuals suffering from Arnold-Chiari I, idiopathic Syringomyelia and idiopathic Scoliosis and other diseases included in Filum Disease. 

 Since the foundation of the ICSEB in 2008, we have been pioneers in the diagnosis and treatment of these conditions. We have applied the protocols of the Filum System® method in more than 3000 first consultations and more than 2100 interventions. Patients from 85 countries on five continents have been able to benefit from the sectioning of the filum terminale by means of a minimally invasive surgical technique, which makes it possible to halt the evolution of the pathology, eliminating its cause – the traction that a congenitally tense filum terminale exerts on the entire nervous system. 

 Each of the patients we have treated has left a deep impression on us. We have witnessed stories of overcoming, courage and hope. Each step along the way has taught us the importance of empathy, respect and holistic, patient-centred care. 

We would especially like to thank our patients and their families for their trust in us. Our mission is to provide them with the best medical care and to support them on their way to a full and healthy life.

In addition, we would like to acknowledge the commitment and dedication of our medical team and our collaborators for making it possible for each patient to receive excellent care; from remote counselling, to diagnosis, treatment and long-term postoperative follow-up. Thanks to their experience, knowledge and vocation, we have achieved great results and have been able to make a difference in the lives of many people. This anniversary and these results encourage us to look to the future with enthusiasm. 

We will continue to work at the forefront of medicine, driving research and improving the quality of life of our patients. We invite everyone to join our celebration, sharing knowledge and raising awareness on filum disease and related conditions. 

 Thank you all for being part of this 15-year journey!

The Filum System® health method stops the progression of idiopathic syringomyelia with possible disappearance of cystic cavities over time.

Figure.1- A patient’s magnetic resonances and their evolution following the Filum System® treatment, from the first preoperative MRI until the 7-year postoperative check-up, which shows that the medullary cysts disappeared.

Syringomyelia consists of cystic cavities within the spinal cord usually associated with a generalized neurological deterioration. The most frequent symptoms are pain in the extremities, neck pain, alteration of thermal and tactile sensitivity, lower back pain, upper back pain, headache, gait disorders, paresis, sphincter alterations. Living with this condition means dealing with chronic pain and a progressive loss of autonomy.

Our Institute specializes in the diagnosis and treatment of primary or idiopathic Syringomyelia, which, according to Dr M. B. Royo-Salvador’s caudal traction theory, is caused by the Filum Disease. Hence, the syringomyelic cavity is considered to be a consequence of the ischemia produced by the medullary traction that is generated by a tight filum terminale, non-detectable in the neuroimaging.

The treatment we propose to patients at our centre consists in sectioning the Filum Terminale with a minimally invasive technique, according to the exclusive Filum System^® health method. The treatment is applied with the objective of eliminating the root cause of the medullary cavities and stopping the progression of the disease.

After 30 years of interventions since Dr Royo’s discovery of the etiopathogenic mechanism of the disease in 1993, our neurosurgical team continues to see that this condition can be treated with excellent results by applying the Filum System^® health method.

“Actually”, says Dr. M. Fiallos, one of the neurosurgery team’s specialists: “not only is the progression of the syringomyelia stopped, preventing the cysts from capturing medullary tissue and its necrosis from expanding – as our patients’ postoperative MRIs show in the short term – but there are also cases in which MR images show how the cavities collapse and gradually disappear in the medium and long term, not appearing new ones (Fig.1). Sometimes, no traces of the disease are justify in the neuroimaging and in parallel we can observe the patient’s clinical improvement.”

Thanks to the treatment that we apply at our centre, the correct blood circulation in the central nervous system is restored: “the results that we have obtained so far are not immediately visible, since they are the indirect consequence of a surgical act. However, they are very satisfactory, both objectively for the neurosurgeons and subjectively for the patients. We perform postoperative check-ups 7-10 years after the intervention approximately and can confirm that the cavities shrink and patients clinically recover”, says the neurosurgeon.

Rare Disease Day 2023

On the occasion of World Rare Disease Day, 28 February each year, we emphasize that Arnold-Chiari syndrome I and syringomyelia are not uncommon to our experts because of their incidence and number in the population. However, they are “orphan” because they have other typical features of this type of disease. 

The Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB) follows the Dr. Miguel B. Royo Salvador’s theory of caudal traction. This theory considers that what causes the cerebellar tonsils to descend Arnold-Chiari Syndrome type I and intramedullary cavities to develop in idiopathic syringomyelia, is a consequence of the abnormal traction of the Filum terminale ligament. 

This ligament is congenitally tenser than normal, affecting the entire central nervous system. Our center offers patients the Filum System® approach, a unique and proprietary method of diagnosing and treating these diseases, which includes minimally invasive surgical intervention to section the filum terminale with excellent results and without complications, stopping the disease development and improving the Quality of Life of patients. It is an alternative to aggressive routine procedures for these diagnoses with frequent and serious complications. 

This year, the focus of International Rare Disease Day is on equity, to achieve that everyone has equal opportunities and access to care. Because rare disease patients are more likely to experience inequality, misdiagnosis, and lack of adequate services in their environment. 

 Our center (ICSEB) has seen patients from 85 countries on 5 continents, each country has a different healthcare system, some of which do not have a public healthcare system. Since 1993, ICSEB has operated on more than 2200 patients using the Filum System® method with excellent results and a 93% subjective satisfaction rate. 

Some are reimbursed by their national health systems, others are supported by foundations, including our own – the Chiari & Scoliosis & Syringomyelia Foundation – and most relying on their own funds. On the website of the Chiari & Scoliosis & Syringomyelia Foundation you can find all the information and the opportunity to get involved in the social help of Filum patients: https://chiarifoundationbcn.com/en/donation-chiari-foundation/ 

#WorldRareDiseaseDay 

 #RareDiseases

ICSEB opens the doors of its new home

The Institut Chiari & Siringomielia y Escoliosis de Barcelona establishes Casa ICSEB to accommodate not only our care activity for patients from all around the world, but also the work of our R&D department.

People stop us on the street, they congratulate us. Neighbours ask about the construction site on Paseo de Manuel Girona and Calle Dr. Ferrán. Some recognise us because we are from the area; others do not even know who we are. However, everyone is happy with the change happening at the Manuel Girona 32 address. This informative note is for them and everyone who is curious to learn a little more about the building and those who will be occupying it.

Casa ICSEB

The emblematic Noucentista building from the 1920s is located in the Pedralbes neighbourhood, in the current Les Corts district, on the southwest corner of the intersection of Paseo Manuel Girona and Dr. Ferrán Street. Classified as an asset of urban interest, it is part of the historical heritage of the Catalan capital.

Antonio Miracle y Mercader obtained the construction permit from the then Constitutional City Council of San Vicente de Sarriá on 24 April 1915, as Managing Director of the “Promotion of Property” public limited company. For a few years, the two semi-detached houses were in a sad state of abandonment and deterioration, even seeing squatters in different parts of the building.

The new project began in July 2018, after passing through the Department of Heritage and Architecture, History and Art of the Barcelona City Council, the processing of building permits from the Barcelona City Council, Barcelona Parks and Gardens, the Municipal Institute, the report to the Architects’ Association of Catalonia (COAC), the mandatory report of the Prevention, Fire Extinction and Rescue Services (SPEIS), and others.

The Manuel Girona 32 houses, once extended and rehabilitated under the design and guidance of architect Jorge Dávalos Errando, have now become the new Casa ICSEB (short for Institut Chiari & Siringomielia & Escoliosis de Barcelona). ICSEB is a medical and research centre concerned with different neuro-cranio-vertebral conditions, which has the support of professors from the Faculty of Medicine of the Autonomous University of Barcelona, the Institut Neuròlogic de Barcelona and the Chiari & Scoliosis & Syringomyelia Foundation.

As of November 2021, a very promising phase begins: the move to the new offices, to accommodate not only our growing care work for patients from all over the world, but also the work of our R&D department, which studies a pathology that affects all humans and mammals: the Filum Disease.

ICSEB’s NEW ADDRESS Paseo Manuel Girona 32, 08034 Barcelona
We are looking forward to welcoming you at the new Casa ICSEB!
We are committed to continue offering and researching the best solutions for our patients.

International Arnold Chiari Syndrome Day

 

On September 28, the International Arnold-Chiari Syndrome Day is celebrated, with the main objective of generating social awareness about this disease that is still little known; which generates a series of problems for people who suffer from it.

Unfortunately, most of the patients we attend at Institut Chiari & Siringomyelia & Escoliosis de Barcelona, ​​apart from the pain they suffer, report having spent a long time trying to obtain a correct diagnosis and suffer from a lack of understanding regarding their symptoms. -both by health professionals and family members-.

For this reason, we want to join this day to show all our support to the patients and relatives who live with this pathology -which is much more frequent than it seems-, providing the most valuable tool: information about this syndrome, based on more than 40 years of research by Dr. Royo Salvador and his team.

This link explains the different types of Arnold-Chiari Syndrome, the symptoms and the treatments available for Arnold Chiari type I Syndrome.

https://institutchiaribcn.com/en/arnold-chiari/

Since 2007, our Institute has been involved in the diagnosis, treatment and monitoring of Arnold-Chiari Syndrome and other pathologies considered of unknown cause, which, according to our research, are manifestations of the Filum Disease and today have a treatment that stops the evolution of this disease and improves symptoms.

On this September 28, we want to draw attention to the importance of a correct diagnosis and treatment. Because wrong information can lead the patient to make a wrong decision; which would imply very serious consequences for his health.

The Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB) awaits you!

We are delighted to share the good news with you: thanks to the good evolution of the pandemic, the increase in the vaccinated population -including ICSEB staff-, the decrease in travel restrictions by the Spanish government, and the decrease in the rates of infection and mortality; from now on, our Institute will again receive patients without the need of carrying out a PCR-test or any analytical test related with Covid-19 to access the medical visits on our premises.

We will continue to apply all the necessary precautions to ensure your protection: the use of masks, hand hygiene, and interpersonal distance.

We hope that with the new possibilities of international travel and the progressive reduction of the restrictions previously imposed due to healthcare measures, many patients who were waiting for this moment will finally be able to travel to our center so that our team of specialists can help them as soon as possible.

You can now book your medical appointments!